January 28, 2014 at 5:34 pm #412
Just wondering whether anyone has suggestions for what we do next as a charity? Is there some project we should be considering? Is there a topic we need to address urgently? Open to any and all suggestions!
PanJanuary 29, 2014 at 2:11 am #413KarenParticipant
I know you did a lot of work on looking at Metformin as a possibility for reducing cancer risk. When I went to Manchester I asked how things were moving forward with this option and was also interested to see that a pilot study taking Metformin is already under way in the States for people with Li-Fraumeni. I was told that once funding could be raised in the UK it was quite possible this study could also go ahead here. The signify study has been a very good step forward for us all but how fantastic it would be if we could find something that could actually help prevent the cancer from developing in the first place. I think it is in all our interests to persue this. I am not sure how much funding is required for a project like this, you may have a better idea, but perhaps we should all have a serious think about fund raising ideas to help move things forward as quickly as possible.
KarenJanuary 29, 2014 at 12:53 pm #415
We (the GPTP53 Trust and Professor Gareth Evans at Manchester) actually put together a bid for a long-term cancer prevention trial using Metformin. Unfortunately we didn’t get the funding but the plan is still there and I hope we can go back to it soon. On the US trial I have been in touch with the lead investigator recently and will be posting an article about the trial soon.
I think for me personally, the big message isn’t necessarily about metformin, it’s that there are active measures people with LFS can take to reduce cancer risk. It’s something I really believe and want to address in my own research – but that research takes time, particularly as I’m not a full-time researcher…
PanJanuary 31, 2014 at 1:31 am #418SKHParticipant
What was the feedback for the bid? I didnt know about Metformin – can you expand? I could probably input into a bid to a degree (time permitting).
Also can you also expand on the active measures you refer to? Is this potentially part of a wider campaign potential?
SallyJanuary 31, 2014 at 11:31 am #420
The feedback was that there was no problem with the scientific rationale or the proposed daily dose of metformin. What we failed to do was to provide convincing evidence that we could recruit enough study participants to be able to give a scientifically valid result in 3 years. The metformin trial in the US isn’t about long term cancer prevention in LFS, it’s more about seeing what short term dosing of LFS does to certain insulin related measures in the blood (I’ve written an article on this, just waiting for some feedback from the lead investigator in the US before I publish).
Metformin isn’t the only active measure that I have in mind – there are others, like daily aspirin for example, but there’s much less evidence that I can call on to justify that. For metformin there’s a few good pieces of evidence and there’s the paper I published on LFS where I try and put it into context.
In the meantime I’ve had some successes in helping LFS patients persuade their oncologists to add metformin to their cancer treatments. It’s a start and it certainly feels to me like oncologists are becoming more willing to consider it seriously.January 31, 2014 at 10:07 pm #421SKHParticipant
I’d like to see it when it comes out. Have you a link to the other one you published? I’ll have a look around here as you might have put it up
SFebruary 3, 2014 at 12:33 pm #424
Sally, the link to my paper is here:
A less technical version is published here:
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